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Age of Autism Contest: Magic Dog Studio Autism Action Bracelet

AofA Science Summary: Benefits to the Lived Experiences of Female Primary Caregivers of Children with Autism

CrockClin Nurse Spec. 2012 Jan;26(1):48-56.

Seeing the glass half full: benefits to the lived experiences of female primary caregivers of children with autism.

Markoulakis RFletcher PBryden P.

Source

Author Affiliations: PhD student (Ms Markoulakis), Graduate Department of Rehabilitation Science, University of Toronto; Professors (Drs Fletcher and Bryden), Department of Kinesiology and Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada.

Abstract PURPOSE:

: Autism spectrum disorders are the most common developmental disorders, affecting 1 in 165 Canadian children. Although the experiences of the caregivers of children with autism have been examined to some extent, a thorough investigation of the benefits of this experience is warranted.

METHODS:

: The lived experiences of 8 married female primary caregivers of children with autism were assessed through a phenomenological study involving background questionnaires and one-on-one, semistructured interviews. All recruited participants completed the study.

RESULTS:

: Benefits were found in all areas of questioning, including financial, social, familial, health, and employment implications, in addition to benefits arising from activities and involvements taken on as a result of raising a child with autism. The findings shed light on an unconventional aspect of the effects of raising a child with autism.

CONCLUSIONS:

: Costs to these women's experiences were not predominant, and benefits arising from the caregiving role lead to positive accounts of their lived experiences. Results have broader implications for the understanding of the primary caregiver situation and the improvement of interactions with individuals with these lived experiences. In this way, clinical nurse specialists may encourage and contribute to support systems that foster a positive experience for caregivers of children with autism spectrum disorder, the children they care for, and their families.

Comments

Shiny Happy Person

Anita - fwiw - another WOW...

Jen

Wow Anita, just wow. What a great letter.

Anita

My second and final response to Paula, after she wrote to say she could not share the full paper with me.

Paula,

Then my response has to be limited to the abstract and what you have shared below.

Perhaps the article is more nuanced and therefore sends a very different message--I obviously do not know. But the message from the abstract is both clear and misleading. The title frames your perspective: a primary caregiver can choose to see their experience as positive or negative. If you choose to see the glass as half empty, then benefits--"financial, social, familial, health, and employment implications"--will be lost to you.

Well, they are lost to me, which would seem strange to any who know me as I am most definitely a glass half full person. Maybe that is because my son, like many children I know, is severely affected. Nowhere in your abstract does it mention that these moms were parenting high-functioning children. My lived experience is that there is such a vast difference between my son and high-functioning children that it seems ridiculous they are diagnosed with the same thing (and in saying that I am not trying to diminish their struggles, as I know very well that the prospects for even high functioning children are often poor as they become adults). Recently I attended an autism event with my child. We were trampolining. No other parent stayed with their child--they drank coffee and visited on the balcony and observed. I actually had to bring my daughter for back up. My son was by far the most affected child there, as the rest of the children followed instructions for a warm-up, took turns, and visited with their trampoline mates. The second most affected child was at a trampoline with us, and had some trouble ending her turn on time. However, she was able to ask me many questions about why my son couldn't speak and wore diapers. She showed off for me, trying to get my attention and approval. She laughed and sang. Clearly, whatever this child's lived experience was, and that of her family, it was barely comparable to that of my son and his family. Sadly, there are children much more affected than my child--but they don't come to these events. They are, for the most part, invisible.

Ironically, when calling up the abstact for your article on PubMed, this article appears on the side: "The health and well-being of caregivers of children with cerebral palsy." The conclusions of that study seem to make some sense. That is, the more severely affected the child, the more struggles for the caregiver. It goes without saying that even those parents of children with more severe CP are doing their best to celebrate the successes, find the silver lining you refer to; however, this does nothing to refute the fact that their lives would be easier if somehow the severity of the children's CP could be alleviated.

I wonder that your research, qualitative or not, makes no effort to draw any sort of distinction regarding how severely a child might be affected and how that might influence the lived experience of those people who love that child. How could this oversight happen, especially when you state up front that "a thorough investigation is warranted". I ask you: how thorough can any investigation be if you have excluded those people who may not be accruing to any degree these benefits that you imply are predominant? And another question: how likely is it that people reading this will NOT generalize, or will stop to ask themselves, "I wonder if these children were among those kids who have less severe problems? It is disengenuous to state otherwise.

For some reason that I cannot fathom, the media and huge numbers of people do not want to admit the fact that as human as it is to find the silver lining in any experience we have, including autism, for many children like my son autism has only been a vicious thief, taking away his health, his happiness, his voice. It has also robbed my family of our finances, taken away my career, and distanced us from family and friends. For you to publish an abstract that implies in any way at all that you've tried to understand autism as opposed to one very specific kind of autism, is both damaging to children like my son and dishonest. You state that you would not deny the voice of these women; however, it is academic, in the most pejorative sense of the word, to create qualitative data that exclude those people who least have a voice, looking at their experience in any way you care to frame or measure. For every person like me who takes the time and the emotional energy I really do not have to write, there are hundreds more who will simply look at your abstract and feel like they've been, yet again, kicked in the gut.

I would like to address other issues--such as how caring for any child with disability has a financial benefit--but I do not have the time, and I sincerely doubt that I will change the mind of you or any of your colleagues, which really does make me feel very sad. Not for myself, but for my son and for all the kids like him. If the best we can do for these children is to try to find the silver lining in the terrible losses they've suffered and daily struggles they endure, we have let them down completely.

Anita

HFAmomto3HFAgirls

Isn't neuroblastoma one of those cancers increased in incidence following infection with SV-40? Just asking. Sounds like she might have early onset Stockholm syndrome.

And, to be blunt, her brother did in fact pass away. Tragic. How would she feel having lived her *entire* childhood as she did when he was between the ages of 2 and 3. Knowing that when her parents became old and infirm that would be HER life unless she institutionalized him.

I still want to know what she *heard* from these mothers that expressed 'benefits' from having untoileted adolescent children. The benefit of not having anywhere to go so having no money wasn't really that big a deal anymore? Yeah, sign me right up for that life! Oh wait! Merck already did!

Anita

The response from Paula seems to be standard. It is the same one I received. I have requested a copy of the article in full before I respond to her email. In the meantime, my head is awash with silver linings.
Tens of thousands of sailors have lost their lives in shipwrecks, but the silver lining: divers have cool places to dive.
Hundreds of thousands of children and adults work in horrible conditions for pennies a day but the silver lining: we can wear cool running shoes.
WWII claimed the lives of millions but the silver lining: we no longer have to endure the awful sight of women with unshaved legs!
European explorers and settlers killed either by accident or on purpose probably 90% of the native population in the Americas but the silver lining: we all get to live here now plus we can admire their groovy totem poles and have lovely ruins to visit on our Mexican vacation.
My son stayed up until 4:00 am last night but the silver lining: I had that many more hours to feel sick to my stomach about the fact that the terrible decline in the health of our children is being matched, step by step, by those people who just don't give a shit.

Not to worry then. Everything has a silver lining It's been proven.

Awaiting the next step

Paula,
While I think most readers appreciate your responding to the critical letter you received, perhaps you'll understand now why having your study's conclusions presented in two different abstracts at two separate times is extremely misleading, and can lead to your study's conclusions being misunderstood and even abused by those with a particular agenda. The pharma-funded media will, no doubt, pick up on the cup-half-full findings only - to make the case for autism being beneficial - which will have negative repercussions for the autism community that is working hard for greater insurance reimbursements, greater awareness of autism's hardships, etc..

You have an obligation to not only conduct your research in an ethical way, but to report it in an ethical way. You have failed on the latter.

Also, please enlighten us as to how autism could possibly be financially beneficial for anyone - high functioning or low. It's simply unfathomable.

I believe the only ethical thing to do at this point is to retract this half of your study and then represent all of your findings all together. Otherwise, you have two misleading reports which will do harm to the autism community and to your own credibility.

Thank you.

Julie Leonardo

I sent an email to the authors and got a response, believe it or not, from Paula:


Hello

We appreciate you taking the time to comment on our article.

Our qualitative study was a small study examining the issues that
caregivers face while caring for a child with autism, and was NOT solely
about benefits accrued.

During the one-on-one interviews women were asked to discuss their
experiences and to provide positives and negatives associated with their
experiences. The article that you are commenting about is obviously
relaying the information on the positive aspects these mothers reported
while caring for their children. This is certainly not to say that
there were no negatives ... because there certainly were. These
findings are being published in a second article entitled The Costs of
Caring for a Child with an Autism Spectrum Disorder in Issues in
Comprehensive Pediatric Nursing. It is also important to note that this
study is a part of a larger study that examined the motor capabilities
of children with autism spectrum disorder. The majority of the children
were considered high functioning along the autism spectrum disorder
continuum, and the majority of the mothers interviewed were taken from
this larger study. However, a few of the children were not classified
as high functioning, and mothers expressed having many difficulties with
their children (e.g., troubles toileting, speech difficulties,
difficulties in social environments, other behavioural issues, etc...).
These negative experiences do appear in the costs article (in press) but
these women did in fact describe benefits, whether or not they represent
all women in similar circumstances.

One of the benefits of qualitative research is obtaining the voice of
each individual interviewee. Qualitative research is NOT meant to be
generalized to all individuals faced with similar circumstances. The
findings from the study published convey the information from the 8
women interviewed and is certainly not intended to be representative of
all mothers of children with autism. I am not sure if you read the
article in its entirety or just the abstract, but do feel that you would
see that there is more to the issue than just the positives if the
article had been read in it entirety.

This phenomena of reaping costs and benefits while caring for a child
with an illness, whether life threatening or not, is not confined to
children with autism. There is a significant body of literature
(pediatric cancer for example) to support this. I, along with another
of my collegues, also complete research in the area of mothers caring
for children with cancer. We have substantiated the same findings as we
did with the mothers of children with autism.

I became involved in the area of mothers caring for children with
illnesses because of a personal experience. My brother was diagnosed
with neuroblastoma (type of cancer) at two years of age and passed away
around his third birthday. Undoubtedly my family's life was in turmoil
caring for my palliative brother who had lost his eyes in his final
stages and had to have every need attended to by my parents, who choose
to care for him within our home. Our family, not just my brother, dealt
with his cancer on a daily basis. At the end of day, all members of my
family, including my parents would say that despite all of the negatives
associated with my brother's cancer and his death, was a silver lining.
In no way would we have wanted to be robbed the opportunity to share in
his life, no matter how brief. I am not trying to insinuate that
having a child with cancer is similar to having a child with autism,
only trying to demonstrate that many people are able to find glimmers of
hope in situations that are difficult.

I apologize if this article has offended you in any way. This article is
not meant to diminish your experience or other parents in similar
situations. At the same time, to not publish the findings from this
study would deny the voices of the mothers of children with autism that
did feel this way. All mothers with a child with an illness experience
different journeys, and they may not all mirror each other.


Paula


_______________________________
Paula C. Fletcher, PhD
Professor & Graduate Co-ordinator
Department of Kinesiology and Physical Education
Wilfrid Laurier University
Waterloo, Ontario
N2L 3C5

publish or perish, no matter how foolish

Excellent letter, Anita.

Dr. Fletcher and Dr. Bryden were confused when they said autism has a financial benefit. They were referring to the benefit to autism researchers, not to autism moms.

Anita

my letter to the researchers:

Dear Dr Fletcher and Dr Bryden,

I am writing in regard to the abstract of your article entitled "Seeing the glass half full: benefits to the lived experiences of female primary caregivers of children with autism" which will be published in full in the new year.

Although it is difficult to grasp your complete message based solely on the abstract, what you seem to be saying is so far removed from my experience of autism that I can hardly believe what I am reading. My son regressed before his second birthday. He went from a happy child who could speak, interact, laugh and enjoy his family and new experiences, to a child who could no longer sleep, smile, speak, understand what we were saying, play with his toys, or even have a bowel movement. Everything about who he was disappeared. He could not hug us, call us by name, accept comfort, learn--the list of what he could no longer do is pretty much endless.

That was more than six years ago. He still is unable to speak, although he can communicate in some very basic way using augmentative communication. He no longer self-injures very often, and for that I am grateful, as we used to have pin him with a pillow so that he would stop smashing his face onto the floor. With the use of melatonin he now sleeps about 8 hours a night--still insufficient, but better than the 3 or 4 hours he had for many many months. He does hug his father and I now, but not very often. He has no friends. Every day is a constrant struggle for him. His quality of life is poor.

In our efforts to help him, our family has spent tens of thousands of dollars. My husband and I both have Master's degrees, but I no longer work because it isn't an option. We live frugally, buying second hand, not buying at all if possible. We drive vehicles that are old. We do not take holidays. We do not have social lives. It has been probably 7 years since my husband and I went out at the same time. We rarely see our familes. We have almost no friends left. We have just remorgtaged our house in order to pay for therapy that my son has been waitlisted for--we've been waiting 2.5 years and will probably wait another 2 at least. My heath has suffered from the stress and lack of sleep of caring for a severely disabled child. I lay awake at night worrying about his future, which seems bleak at best, in spite of our many years of endless efforts to improve his quality of life. Our daughter takes a constant back seat to the needs of her brother--she understands the necessity, but should she have to sacrifice her own childhood as well?

I know dozens and dozens of mothers who could write you the same letter. Moms who no longer have husbands because of the stress of raising a child with autism. Moms who live in constant fear of the future. Who have to take classes to learn to protect themselves from their growing violent children. Moms who live in isolation, unemployed of necessity, who spend their days fighting the school systems and trying to get help that seems to never be forthcoming. These moms are not weak. They work hard for their children, making herculean efforts to help them and sacrificing on a daily basis. Like me, many of the volunteer for charities that can help our children. We do laugh, we celebrate our children's successes, we love our children profoundly as they are even while we try to improve their quality of life. However, none of the moms I know would honestly say that any benefits accrued from the experience of having a child with autism has come even close to making up for the terrible struggle their children have had. Trying to paint my son's serious illness--one that might make his entire life a difficult struggle--as a great learning experience for me is revolting, if I am honest. And in our case, so very far from the truth as to be a lie.

I don't see why not

Pamela Bryden
pbryden@wlu.ca

Dr Paula Fletcher
email: pfletcher@wlu.ca
phone: 519-884-0710

http://www.wlu.ca/calendars/department.php?cal=3&d=973&s=468&y=51#Faculty_Staff

Barry

Autism is nothing more than the extreme end of vaccine damage.

And the people responsible for inflicting that damage, are the same people who fund this kind of crap to keep muddying the waters of public perception.

Our children are victims of a senseless crime, and the rich perpetrators will do everything they can to keep that truth from getting out. Because they know full well that the truth about our kids can bring the whole house of cards crashing down.

Theodore Van Oosbree

"And going a little further, he fell upon his face, praying, and saying: My Father, if it be possible, let this chalice pass from me. Nevertheless not as I will, but as thou wilt."
-Mt 26:39

Cassandra

Orwell could not believe this.

Tim Kasemodel

Ooooops!

I meant Theresa Cedillo! One amazing mom she is....

Tim Kasemodel

"All recruited participants completed the study."

I got as few moms that I would like to "recruit" for another study. I'd start with Teresa Conrick and Michelle Cedillo!!!!

I can't wait for the study on dads that are primary caregivers - got a few of those I can think of as well......


Dawn Havas

Unbelievable! Check out this study by the same. Obviously they don't have a freaking clue to how stressful it is to raise a child with autism. I wouldn't be surprised if the vaccine manufacturers had something to do with this apparent false information in the autism study. http://www.ncbi.nlm.nih.gov/pubmed/15286255

Jenny Webster

I swear.... if you could see me right now you would call the men in the white coats... Never thought I could laugh so hard while crying at the same time (I have dubbed this new emotion Laubbing --laughing and sobbing at the same time). I have no money, no social life, I have been dumped because of my kid more times than I can count, I despise most of my family, my health is in the shitter and I can't get a job!!
How many times do you tell the truth??? People ask you... How are you? I am fine. How are things?? Great! Financially? OH, we're fine! My child is a JOY!! --These are the things we say to get through the day... Do you know how many times I have been asked by these evaluators, "So do you engage in activities outside the home?" YES! yes, sure, we do lots of things, family is great, they really help out...
jesus %^$#. How stupid is this shit... And this was done in Canada. Canadians are even more cheerful liars than we are.

What a waste. What an insult.

Sue Morgan

There is ONE benefit, but the child is high functioning. I love him perhaps more than if he were normally functioning. I would lie down in traffic to cure him of his autism. Is that a benefit, I wonder?

Pam

What are the benefits of being a female primary caregiver to a child with autism? Well, dealing with my aggressive and anxious teenage son with autism motivated me to take martial arts classes so that I could defend myself against him during meltdowns. Is that REALLY a good thing?

nhokkanen

A quick read through mothers' comments at Age of Autism, Facebook, Yahoo listservs, newspaper blogs, parenting magazine websites, etc. ad nauseam swiftly nullifies this bizarre piece of Orwellian machination. The mothers' autism stories of their physically ill children range from inconveniences to tragedies.

Unbelievable. The people behind that study have to come from some other bizarre planet... or they are receiving some "financial benefit" to come up with this absolute denialist crap.

Angus Files

Well done you all couldn`t put it better what a load of, sh- one- T-- You write,,,

Angus


Carolyn M

If it's such a "positive experience", then why did that study not too long ago (I don't have the reference right now) state that we were stressed out - some of us nearly to the extent of having PTSD? People having "positive experiences" are not usually stressed out to such a severe degree.

Their conclusions are utter and complete garbage.

HFAmomto3HFAgirls

Yes. Exactly. Because I envisioned cleaning poop off of my walls. Poop is really an art supply, didn't they tell you at the pediatricians office?

If YOUR child isn't as *creative* with their poop as MY child, you really shouldn't feel disappointed. Really.

Maybe poop smeared walls earn money somehow? Hmmm, maybe I need to look that one up on eHow. I haven't come by the knack of that just yet. We still qualify for food stamps.

Shiny Happy Person

Not sure what you all are griping about. I mean, I consider wiping my teen age son's butt for him and occasionally scrubbing out the mess left behind in his underwear to be right at the top of my list of "benefits arising from activities and involvements taken on as a result of raising a child with autism." Watching him hit himself in the side of the face whenever he bites his cheek is a real hoot too. My wife and I - we don't need to go on a date more than once or twice every 5 years or so. And that last $1,000 invoice for medical expenses? Bonus. Yup, we're movin' on up. Bring it. It's all good. Thanks autism - you're the gift that keeps on giving.


 Michelle

Would love to know WHO paid for this garbage...

Media Scholar

Donna and John, you are exclusively right. These studies are more suitable for Enigma code-breaking than logical, considerate translation followed by interpretation.

Essentially, this is talking points for the injections nurse to use.

Merry Flu Shot Season! Everybody young and old is sick! CDC strikes again!

Jeannette Bishop

"What does not kill you only makes you...?"

I would really love to see the questions, demographics, recruiting methodology, and of course answers given by these 8 married women assuming such information would be included, but not so much as to pay for it (as if I could).

Nora

I looked at the title and thought this had got to be a joke!

ConcernedMom

What a load of horseshit.

Stop Big Harma

"Benefits were found in all areas of questioning, including financial,"

That is the single most insane conclusion that has ever been written in all autism literature. Ever.

How in God's name is anyone ahead financially because of autism?

These people are out of their minds. Somebody subdue them with a sedating drug. Quickly.

Benedetta

Postive experience that teaches me compassion, patience, tolerence,but how come I am so sad any time I get a small moment to myself?

Donna L.

Holy sh!t, what's next - new editions of mothering books with chapters devoted to "How Not to Feel Disappointed When Your Child Doesn't Develop Autism"??

"clinical nurse specialists may encourage and contribute to support systems that foster a positive experience for caregivers of children with autism spectrum disorder, the children they care for, and their families."

Written for nurses...maybe this is some sort of attempt to alleviate the guilt that nurses must (or should) feel for destroying entire generations of children by pushing the plunger on the syringe. Sort of like how they use multiple sharpshooters in a firing squad to lessen the guilt of any one particular shooter.

Nancy

What?!!

jenna

Oh. My. God.

More substantiation for not helping us, us being the moms trying to pull our kids out of burning houses and engulfed in flames ourselves.

The biggest lies here are around finances and careers--most moms I know have been utterly gutted financially and have had to sacrifice hugely on the career front.

I'm off to listen to Christmas music as I can't continue to live in the anger generated by trash like this.

John Stone

I remember seeing extracts from a Nazi propaganda movie once called "Hitler makes a homeland for the Jews".

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